The inspirational Ali Campbell from Dorset, found an ulcer in her mouth at the start of 2017. When it turned out that it was mouth cancer she embarked on an incredible journey which has so far taken many twists and turns.
Here, in her own powerful words, she explains the emotional, physical and even financial impact that mouth cancer has had on her life.
“It started with a simple ulcer in January 2017. It was on the top left roof of my mouth, naturally I went to the chemist and bought bonjela and took advice from my crochet pupils; “put an aspirin on it”, “it works for my son” etc., but it wasn’t going away.
“On the 15 February, I phoned my doctor. I thought that all I would need was a simple course of antibiotics, but she sounded concerned. She wanted to see me straight away. 15 minutes later the “C” word was first mentioned. “Just to be sure”, she said calmly. I was going to be fast tracked to the Maxillofacial (Max Fax) Department at Dorset County Hospital in Dorchester.
“When I got home I had to tell me soulmate and husband, Ian. When I mentioned cancer having to be ruled out, I had a lump in my throat and I had to turn away as tears welled. He was very supportive and matter of fact. There and then the phone rang.
“It was Max Fax. They had an appointment cancellation the next day that I could have. ‘Oh my word’, this was fate. So, I went on the 16 and was referred to have a biopsy “just to be sure”. Yep, those words again.
“On the 1 March I had my biopsy, which was very painful once the local had worn off, on the 17 I went for the results.
“Yes, it was cancer of the oral cavity and a big op was planned. Ian and I both had a little “wobble” whilst waiting for the head and neck nurse to talk to us, but we smiled, and my positive mental attitude kicked in from that point forward.
“Due to the fact the operation would be 12 hours, it took a while to arrange, but the NHS did well, getting me mentally and practically prepared, e.g. getting a peg (feeding tube fitted). In I went on the 27 April.
“After four days in a medically induced coma, I decided that I had best get up and get on with life, so I did.
“My op involved taking skin and bone from my left shoulder and after cutting the cancer out of the top left of my mouth, reconstructing my mouth and jaw. I was nil by mouth for eight weeks and lost over three stone.
“Finally I had the bikini body I had always wanted!!.
“I was supposed to stay for 30 days in hospital, but despite the amazing view of Brownsea Island, I managed to escape, much to the disgust of my surgeons, all four of them. I assured them that seeing and being with my dogs, my ducks, chickens, bunnies and cows was what was best for my recovery!
“I had promised to go and see my surgeons every week, it was then that I was told that the cancer had “kissed” my bone. I would need six weeks (every day) of RADICAL Radiotherapy. I had to have a head mask made, and being claustrophobic, that was a lot worse for me than the op itself!
“One of the biggest problems with getting cancer is the financial aspect of it. I lost my job, I was a self-employed crochet teacher and designer for books and magazines.
“My husband is also self-employed and the hour journey to Poole Hospital was taking its toll on our finances.
“After contacting MacMillan for help, which I didn’t get from them, my internet research led me to the Dorset Cancer Care Foundation (www.dccf.co.uk). I had never heard of them before, but I saw on their “website that you could apply for a grant, so I had nothing to lose and I went for it.
“About a week later I had a cheque in my hands for £360, enough to pay for my petrol there and back for the six weeks. However, something else wonderful happened.
“A lot of my friends volunteered to drive me for my “zapping” sessions, and even though I explained that I could give them the £10 I got from the DCCF, they didn’t want it, so I set up a “Just Giving” page and gave the money back to the DCCF.
“Word got around and soon I had raised £1,300 for them!!
“Once my radiotherapy sessions had finished, although I still had my positive mental attitude with me, the zapping had taken its toll.
“I had a long recovery ahead of me and when I went to see the oncologist six weeks later, he was happy that the zapping had done what it was meant to do, but the side effects were not great. What I thought in the summer was my recovery going well, I had taken a huge step backwards.
“I forgot to mention about the hair loss! I didn’t know that it was going to happen. One night my husband noticed it and said “oh you’ve got a little bald patch on the back of your head”. When I looked properly it was worse than a little bald patch. It was very “tufty”, so my friend shaved it off for me.
“Smiling on, I had more visits to the dentist at the hospital, as well as the surgeons, physio, speech therapists and dieticians!
“I had a “hole” develop in the skin flap in the roof of my mouth, one of the side effects, the radio waves had shrunk my flap!! The made me a splint to wear. I hated it.
“My mouth got so sore that after two weeks I was nearly in tears. Fortunately, I had another visit due at the hospital and my splint was shaved and re moulded to make it more comfortable. Fortunately, it is and I am wearing it almost all day.
“The next day, that’s today in fact (29 November 2017) the head and neck nurse phoned me about the results of a blood test that I had several weeks ago. I told her what the surgeons had said, I passed on the good news, but nurse ‘Doom and Gloom’ said that the can’t be certain of that without a scan and that she would look into it!!
“She’s always been like the Grinch, from the very beginning. There’s always one isn’t there!”